Acoustic Neuroma Association of NJ

 

Kathy Dylewski (Surgery, Radiotherapy)
Interview by Kristin Ingersoll
 

Kathy Dylewski, Acoustic Neuroma Association of NJ Kathy lived a good and fairly typical life until 1998. She was born in Hackensack, NJ, the daughter of a military man. The family moved frequently with the Air Force until she was in the 8th grade. After graduating from High School in Woodridge, she went on to graduate from Rutgers University with a major in Zoology and a minor in chemistry. Employment opportunities at the time seemed limited to animal experimentation which did not appeal to her so she took a job as an executive secretary in NYC. She married, moved to Sparta, had two children, and found work in a local law firm. There she was trained to do paralegal work in real estate, which became her career and one which has been very good to her. Kathy loves Sussex County with its views and wildlife and has now lived there for over 30 years. After 10 years with the local law firm she sought and obtained employment with Riker, Danzig, Scherer, Hyland and Perretti LLP at Headquarters Plaza in Morristown. Even after 17 years she feels privileged to work there and feels like a member of a corporate family. She is deeply grateful for the support she has experienced there throughout her ordeal.

It all began in 1998. Kathy sought medical attention because of a hearing loss in her right ear. Despite an MRI with contrast and other tests, no explanation was provided for the loss. She accepted this and was grateful for her normal hearing in her left ear. In 2001 she unexplainably lost hearing on the left side. This time when they did an MRI with contrast they found a 14mm acoustic neuroma on the left side. After 6 months of “watching and waiting,” and an additional hearing loss in the left ear, a middle fossa craniotomy was done in February of 2002 to decompress the tumor rather than to remove it because of her hearing loss in the other ear. She began searching the Internet and going into related chatrooms where she heard about FSR (Fractionated Stereotactic Radiotherapy). Her research persuaded her that this was a safer and an effective alternative to Gamma Knife that she understood could cause damage to healthy tissue as well as to the tumor. Having had an unpleasant surgical stay at a NYC hospital, she was determined to seek treatment somewhere other than in NYC. She chose Johns Hopkins Hospital in Baltimore, MD, and can’t say enough good things about the care she has received there. They have been compassionate, attentive and responsive to her needs and she gladly travels the extra distance to receive care there. FSR was done there in October of 2002 and she had virtually no aftereffects. 18 months after FSR her tumor has shrunk and darkened in its center, and there has been no damage to surrounding normal tissue. Kathy continued to lose hearing in the left ear. Because of a moderate to severe hearing loss on the AN side and profound deafness on the other side, cochlear implant surgery was performed at Johns Hopkins in December 2003. The implant was activated a month later. She must return periodically for “mapping” of the implant initially at 1 month, 3 months, then at 6 months. Since activation she has been re-learning how to hear. Sound is not the same as it had been and she must re-identify what sounds are, but it has been incredible for her. For the first time in a long time she had hearing on both sides and could even tell what direction sound was coming from! She felt that it opened her world up to her again! She had been told it would be difficult and could be frustrating until she adjusted to it and learned to hear with it, but she was well prepared for the frustrations and found it to be terrific right from the beginning. In fact, when initially approached for an interview she had declined, but after her implant was activated and she realized what a powerful and positive change it made in her life, she wanted to share her story in hopes that it might help someone else.

Then on Mother’s Day of 2004, the unbelievable happened. All of a sudden something was wrong. Her first thought was that the implant had stopped working. She soon realized it wasn't the implant but that she had lost even more hearing on the AN side. Without her cochlear implant her world would have been silent. It was a depressing setback for someone who had had one after another and she admits to having her ups and downs to struggle through. Ultimately she gathered her strength and her supports and refocused on her positives of which she is increasingly aware. She acknowledges that her priorities have shifted and material things have diminished in importance. She is determined to live life to the fullest and to take nothing for granted. Things that once upset her don’t matter to her any more. Although she says that she refuses to let her hearing problems change her life, in fact it is obvious that they have but in many ways for the better. Now a single woman with grown children, she is doing things that she always intended but put off including joining a gun club for target shooting, taking karate (which has helped her immensely with her balance) and taking art classes. She describes herself as an aviation enthusiast and former pilot and is looking for new ways to contribute as a volunteer at the annual Sussex Airport air show. The one thing which has had to be put off, but which she vows to return to, is ballroom dancing. She thinks she is approaching a time when her ability to interpret the sounds of music will allow her to return to the dance floor, but she hasn’t yet since a difficult early effort.

Kathy has actively looked for support along with information in many places throughout this journey and has found ALDA (Association for Late Deafened Adults) to be particularly helpful. She encourages other patients to seek information and support both online and through support groups. She also emphasizes the importance of going where the experience is. In the beginning she accepted what she was told. Now she knows it is essential to educate yourself and be treated by the few doctors in the few hospitals with the most experience doing the procedures you select. The journey has been difficult but with great determination Kathy has proved that life is what you make it with the assets you have.


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